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Disclaimer:'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

Saturday, August 17, 2013

The US Food and Drug Administration (FDA) has approved a new clinical trial of a groundbreaking strategy using stem cells for the treatment of MS (multiple sclerosis).

Researchers from the Tisch MS Research Center of New York say the FDA has granted approval to begin early clinical investigation (phase 1 trial) of autologous neural stem cells in the treatment of MS.

Multiple sclerosis is a chronic disease that attacks the central nervous system (the spinal cord, optic nerves and brain). Common symptoms are numbness of the limbs, but more severe cases can lead to paralysis and blindness.

According to the Multiple Sclerosis Foundation, there are currently between 350,000 to 500,000 people in the US who have been diagnosed with MS, and 200 people are diagnosed with the disease every week.

The new regenerative strategy will involve using autologous, mesenchymal stem cell-derived neural progenitor cells (MSC-NPs), which will be harvested from the bone marrow of 20 MS patients who meet the criteria for the trial.

Spinal injections of stem cells

The stem cells will then be injected into the cerebrospinal fluid that surrounds the spinal cords of the patients.

The main objective of the clinical trial, the researchers say, is to determine the safety of the treatment, while the secondary objective is to measure the effectiveness.

The injections will be repeated at 3-month intervals, with their safety and efficacy frequently monitored through follow-up visits. After the final injection, patients will be monitored for up to 27 months.

Preclinical testing of this procedure showed that after injecting the stem cells, brain inflammation was reduced in seven MS patients, myelin was repaired (an insulating layer that forms around nerves), and protection of the neuronal structure and function of the brain was improved.

Dr. Saud Sadiq, senior research scientist at Tisch MS Research Center of New York, says:

"This study provides a hope that established disability may be reversed in MS."

Treatment for optic neuritis may help Optic
neuritis (inflammation of the optic nerve), which causes short-term vision
loss, may be unpredictable. But learning about options, such as H.P. Acthar® Gel (repository
corticotropin injection), is a good way to take charge of your treatment plan.Get a glimpse at how
Acthar may help >

Meet Emily.
Super mom of 3 boys
Living with MS since 2010

“The relapse that led to my MS diagnosis began as a slow,
stabbing pain in my left eye and intensified over the next 2 weeks. My
vision diminished from being able to see clearly out of that eye to the
point where it was as if I was looking through wax paper. I was told I had
optic neuritis.

When I started taking Acthar, my vision went from being completely gray to
gradually more shades of light. Then it went to being like pinpricks, as if
I could see through a lace doily. And finally it came back to a more stable
vision. Over the next couple weeks as my vision continued to improve, I was
able to get back to my regular routine. Things like cuddling with my boys,
and talking to my husband about weekend plans became viewed as very
precious gifts.

I refuse to live in fear of what I can't control, and instead
I choose to be prepared should a relapse occur. It is comforting to know
Acthar is available for me if a relapse does happen.”

This story
is about one person's experience with Acthar. Everyone is different and results
may vary. It is important to discuss all treatment options with your healthcare
provider who is in the best position to know what is right for you.

Friday, August 16, 2013

Alternative and Complementary Therapies for Multiple Sclerosis

The term alternative therapy, in general, is used to describe any medical treatment or intervention that has not been scientifically documented or identified as safe or effective for a specific condition.

Alternative therapy encompasses a variety of disciplines that range from diet and exercise to mental conditioning to lifestyle changes. Examples include acupuncture, yoga, aromatherapy, relaxation, herbal remedies, and massage.

Optimizing your vitamin D levels may be your single greatest weapon in combating a wide range of illnesses including multiple sclerosis (MS), narcolepsy, rheumatoid arthritis, inflammatory bowel disease, type 1 diabetes, psoriasis, and even some cancers. Vitamin D is classified as an essential, fat-soluble vitamin. Physicians now recognize that it also functions as a hormone-like compound. Hormones are your body’s chemical messengers and are responsible regulating growth and development, metabolism, mood and other vital functions.

People living with these varied illnesses share a common factor. They are often either deficient or have less than optimal values of vitamin D. However, there is a chicken or egg type confusion in that physicians do not know if these individuals develop the illness because they are low in vitamin D or if their disorders are directly responsible for the low vitamin D levels. Or it may be a combination of these two facts.

Our 21st century lifestyles contribute to our less than optimal levels of vitamin D. We spend much less time outdoors than our parents and grandparents. Even when we do spend time outdoors, we often apply sunblock that prevents us from making adequate levels of vitamin D. Our other main source of vitamin D was from animal protein. However, modern agricultural practices limit animals’ exposure to direct sunlight and thus our food supply has lower levels of vitamin D.

Drowning in a sea of medical care

Early in the course of my illness, I experienced a rapidly worsening progression of my symptoms. Over the course of the first few years, I progressed from using a cane to using forearm crutches, and then onto to a rolling walker when out of the house. I was also working full-time at a stressful new job. Robynn and I quickly realized that our two-story house would no longer work for us and we began shopping for a ranch style home to make life easier for both of us.

Shortly after my MS diagnosis, I had received five intravenous infusions of steroids and numerous rounds of oral steroids, all within about 18 months. In addition, my neurologist prescribedintravenous immunoglobulin (IVIG) infusions and interferon beta 1a. Yet despite the best efforts of my physicians, my MS continued to progress without any remissions. My energy levels, along with my morale, sunk to rock bottom. My fatigue and sleep problems (yet to be diagnosed as narcolepsy) were running rampant. The combination of a marked reduction in physical activity and the appetite stimulating effects of the steroid treatments, contributed to a weight gain of over 70 pounds. And the cumulative side effects of all the medications had rapidly become as much of a medical concern as the disease itself.

“Please throw me a lifeline, now!”

My neurologist recommended that I try an immunosuppressive medication to combat my worsening multiple sclerosis and suggested we consider a wheelchair to help with my mobility. However, before I could try any further treatments, I came down with a severe case of pneumonia. After running every blood work panel imaginable, my primary care physician explained that my body was very weak and it was most probably due to repeated MS treatments. It was time for Robynn and me to review the overall treatment strategy and research our options.

I am longtime listener to the radio host, physician and author Dr. Ronald Hoffman, MD. He has always been in the forefront of medical research and has been a staunch advocate for patients to work with their physicians to achieve optimum vitamin D levels. We learned that there is a high correlation between MS and low levels of vitamin D.

After some research I asked my doctor to test my vitamin D level and he agreed. When the results were available, he simply stated, “You are fine.” I had to ask several times to get him to give me the actual number. My vitamin D blood test showed a level of 30 and my physician said it was fine. We told him about our research and he still said I was fine. We were shocked. Later, my neurologist said I was fine. Yet, all of the research showed that although I was not at risk for rickets, I was far from optimal. It seemed as if these physicians were scared of this humble vitamin, but were fine pushing potentially life altering MS treatments.

The sunshine vitamin to the rescue

We decided that I was going to begin high dose oral supplementation of Vitamin D and get my blood levels regularly checked. My goal was to get my level over 50, which is what is recommended by the Vitamin D Council. We resolved that I needed to regain my strength and stamina before even considering any additional treatments for my MS.

At twelve weeks into my vitamin D supplementation, our family went to a local park for the afternoon. My typical behavior became sitting on the park bench watching the kids play, but today something felt different. Quite impulsively pushing aside my walker, I grabbed my cane and began walking with only my cane. Even though I was not breaking any speed or distance records, I was walking alongside my children for the first time in two very long years.

I pushed myself through physical therapy rehabilitation and can remember completing my first walk around the block, then my first quarter mile. Through hard work and motivation from my great family, I was able to complete a one-mile walk within the first year of treatment.

My current physicians are very supportive of my vitamin D strategies. It took another five years to lose all the weight I had gained. Robynn and I also know that vitamin D is not a substitute or a cure-all for MS. In fact, my vision issues continue to progress while all my other symptoms are all still present. I still take vitamin D supplementation but I have increased my target level to 70, especially during the winter months when my levels decline very quickly. I have also noted that my mood, pain threshold and overall sense of well-being are elevated when my vitamin D levels are their highest.

We strongly urge all our readers to get their vitamin D levels checked by their physician. Perhaps this is why we all feel better after a vacation of fun in the sun? That’s my story and we’d really like to learn about yours!

Thursday, August 15, 2013

A new study will test an exercise program geared specifically toward MS patients. Breaking the cycle of fatigue and inactivity could improve your quality of life.

Canadian researchers hope an exercise routine designed for those with multiple sclerosis (MS) will show increased benefits over traditional guidelines. In their upcoming study, which is currently accepting volunteers, investigators will follow MS patients as they engage in a specially designed “Multiple Sclerosis Tailored Exercise Program” (MSTEP).

These volunteers will be compared to another group who exercise according to current clinical guidelines. The investigators won’t know who is assigned to which exercise group. According to the study design, the researchers will examine the effects of MSTEP on the exercise capabilities of people with MS who live sedentary lives and would like to add exercise to their MS self-management routine.

The study, which will enroll 240 patients, is built on earlier research showing that MS patients with even mild disability, as measured using the Expanded Disability Status Scale (EDSS), have a greatly reduced capacity for exercise. Compared to a healthy control group, those with minimal MS disability did not perform as well at push-ups, curl-ups, or even demonstrating grip strength.

Fatigue: A Vicious Cycle

According to the National Multiple Sclerosis Society (NMSS), “Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people. Fatigue can significantly interfere with a person's ability to function at home and at work and may be the most prominent symptom in a person who otherwise has minimal activity limitations. Fatigue is one of the primary causes of early departure from the workforce.”

It’s difficult to exercise if you suffer from debilitating fatigue. However, exercise has been proven to reduce fatigue in some MS patients.

In years past, exercise was believed to be detrimental for those with MS. After Wilhelm Uhthoff’s discovery in 1890 that increased body temperature resulted in a temporary rise in MS symptoms, patients were often instructed to avoid physical activity because it might worsen their MS.

In a 2002 study, Swiss researches proved that assumption wrong, concluding that heat sensitivity shouldn't prevent MS subjects from engaging in regular exercise and physical activity. The study showed that those who exercised experienced a reduction in fatigue, an improvement in fitness and activity levels, and a higher perception of their health status.

Physical Activity Impacts Quality of Life

In a survey regarding physical activity, conducted in part by researchers at the University of Wisconsin, 215 patients were recruited from the NMSS to fill out questionnaires about their readiness to engage in physical activity as well as their health-related quality of life.

“Exercise was found to be a moderator between functional disability and health-related quality of life,” said Connie Sung, Ph.D., an assistant professor at the University of Wisconsin.

The most important takeaway from the study, Sung added in an interview with Healthline, is that “Health-promoting behaviors, including regular exercise, are important for health-related quality of life, [which] in turn is related to better employment outcomes. Rehabilitation professionals should consider including health promotion interventions in vocational rehabilitation services for individuals with MS.”

Get Moving!

For people with MS who have been living a sedentary lifestyle, switching gears and becoming more active is best done gradually.

“The first step is always to talk to a health care provider who is knowledgeable about MS and physical fitness to determine what type of exercise is best for your physical condition,” saidMegan Weigel, DNP, a nurse practitioner and MS Certified Nurse at Baptist Medical Center in Jacksonville, Fla. in an interview with Healthline.

“When you start out on a new exercise program, plan to exercise during your best time of day,” Weigel advises. “Be sure to stay cool and hydrated. Start slow, ease in, and reward yourself for progress!”

So what type of exercise is best? “Since everyone with MS has different symptoms, there are no specific exercises for MS,” Weigel says. “Also, types of recommended exercises vary based on physical fitness level and other medical conditions. I definitely recommend yoga and tai chi for all types of MS as they are beneficial for balance and anxiety.” Perhaps the upcoming Canadian study will demonstrate that MSTEP is also a viable option.

But what if you can’t get motivated? “Group exercise classes can be fun, and many people find it easier to exercise with a buddy to hold themselves accountable," Weigel says. "Adding exercise to your life with MS is an excellent and recommended lifestyle change.”

No Downside to Exercise

Even if this forthcoming study fails to prove that an exercise routine designed for MS is better than traditional recommendations, regular exercise is still a healthy choice.

“Engaging in physical activity is of the utmost importance to break the cycle of inactivity, low level of functioning, and higher level of disability,” stresses Sung. “Although encouraging exercise and physical activity is potentially challenging given mobility issues associated with MS, possible options include developing self-efficacy, focusing on an enjoyable experience, establishing an environment in which people feel comfortable, and developing social support both in and out of the physical activity environment.”

While becoming more physically active is a positive first step, sticking to your fitness plan is key. Sung cautions that, “Individuals with MS who are already engaging in exercise and physical activity still must address their intentions to continue a regular exercise program.”

For more information about how you can take part in the exercise and MS trial, contact carolina.moriello@mcgill.ca.

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Wednesday, August 14, 2013

After decades of research, multiple sclerosis patients are seeing a "rapid expansion" of effective new treatment options, according to a review article in the journal Neurologic Clinics.

Recently approved drugs, as well as medications being tested in clinical trials, appear to be more effective than the first generation of new drugs introduced in the 1990s. But the new medications also may present complex side effect profiles, according to the article's author, Dr. Matthew McCoyd of Loyola University Medical Center. McCoyd is a neurologist who specializes MS.

"Today, we stand on the precipice of a changing landscape in MS therapies," McCoyd wrote. "Several new medications have been approved by the U.S. Food and Drug Administration in the United States, and several more are awaiting a final decision or are completing phase 3 clinical trials. The question facing physicians, patients and families is not just a question of remedies, but how to navigate the increasingly complex effective treatment options for MS."

The first effective drug (interferon beta-1B) for the treatment of relapsing forms of MS was approved in the early 1990s.

In recent years, several other effective new drugs have been approved, including fingolimod (Gilenya), teriflunomide (Aubagio) and BG-12 (Tecfidera). Side effects include cardiac and eye problems (fingolimod); diarrhea, nausea and hair thinning (teriflunomide); and flushing, diarrhea, nausea, vomiting and respiratory tract infections (BG-12).

The criteria for diagnosing MS have been simplified and streamlined. This likely will increase the number of patients who will be diagnosed, or at least allow them to be diagnosed at a much earlier time.

Although a single cause of MS has not been identified, there is growing evidence thatvitamin D deficiencyplays a role.Vitamin Dsupplementation is a safe and potentially beneficial treatment. But there are fewer data to support other dietary supplements. Nor, contrary to some claims, is there convincing evidence that adietrich in polyunsaturated fats, omega fatty acids and multivitamins has an impact on disease progression or relapse rate, McCoyd wrote.

McCoyd concludes: "There is no simple therapeutic answer for the treatment of MS, no one-size-fits-all remedy to this notoriously heterogeneous disease. Multiple considerations must be made and understood. However, it is now at least some comfort that patients and their physicians have a rapidly expanding number of options at their disposal."

NEW YORK, Aug. 14, 2013 /PRNewswire/ --The Tisch MS Research Center of New York announced today that it has received Investigational New Drug (IND) approval from the Food and Drug Administration (FDA) to commence a Phase 1 trial using autologous neural stem cells in the treatment of multiple sclerosis (MS). MS is a chronic human autoimmune disease of the central nervous system that leads to myelin damage and neurodegeneration and affects approximately 2.1 million people worldwide.

"To my knowledge, this is the first FDA-approved stem cell trial in the United States to investigate direct injection of stem cells into the cerebrospinal fluid of MS patients, and represents an exciting advance in MS research and treatment," said Dr. Saud A. Sadiq, Senior Research Scientist at Tisch MS Research Center of New York and the study's principal investigator.

The groundbreaking study will investigate a regenerative strategy using stem cells harvested from the patient's own bone marrow. These stem cells will be injected intrathecally (into the cerebrospinal fluid surrounding the spinal cord) in 20 participants who meet the inclusion criteria for the trial. This will be an open label safety and tolerability study. All study activities will be conducted at the Tisch MS Research Center and affiliated International Multiple Sclerosis Management Practice (IMSMP).

Tuesday, August 13, 2013

TheMyelin Repair Foundation (MRF) and Gencia Corporation today announced a collaboration to advance myelin repair therapeutic development for Multiple Sclerosis (MS). Through its unique Accelerated Research Collaboration™ (ARC™) model, the Myelin Repair Foundation will partner with Gencia Corporation to assess the myelin regenerating capabilities of the company’s proprietary therapeutic compounds for MS.

Through this unique partnership, Gencia Corporation will work closely with researchers at the Myelin Repair Foundation’s Translational Medicine Center, a laboratory facility dedicated to the evaluation of promising multiple sclerosis candidates for myelin repair. Led by MRF personnel with extensive biopharma experience moving therapeutic compounds into the clinic, the MRF Translational Medicine Center investigates and advances promising myelin repair drug targets toward commercialization.

“The Myelin Repair Foundation’s patient-centric, collaborative approach to develop the next generation of MS therapeutics makes them an ideal partner for us to bring new treatments to the clinic,” said President and CEO Allen Cunningham from Gencia Corporation. “We are excited to work side by side with MRF, utilizing their novel myelin repair research tools and assays at the MRF Translational Medicine Center. With this partnership, we are well positioned to expedite myelin repair therapeutics development forward, meeting the needs of MS patients.”

“Gencia’s forward-thinking approach to remyelination aligns nicely with our goal to bring the next generation of MS treatments to patients,” said Chief Research Officer Dr. Jay Tung, Ph.D, from the Myelin Repair Foundation. “We are thrilled to be working with Gencia to examine new ways to treat MS. As a non-profit organization, we seek to partner with innovative companies doing exciting MS research in myelin repair.”

The Myelin Repair Foundation’s rigorous, industry-leading Translational Medicine Platformconsists of its Translational Medicine Center, contract research organizations and the MRF’s research consortium. The goal of the MRF Translational Medicine Platform is to ensure comprehensive validation of potential therapeutics into clinical development.

It has been conjectured that focal atrophy is associated with emotional decline. However, conventional MRI has revealed that the pathological characteristics cannot fully account for the mood disorders.

Dr. Aiyu Lin and colleagues from the First Affiliated Hospital of Fujian Medical University used the voxel-based morphometry method to compare the difference in the clinical manifestations and imaging parameters of Chinese patients with multiple sclerosis and healthy controls.

Furthermore, our study is the first to apply the Repeatable Battery for the Assessment of Neuropsychological Status scale in Chinese patients with relapsing-remitting multiple sclerosis to evaluate cognitive function.

The researchers suggest that gray matter atrophy exists in relapsing-remitting multiple sclerosis, and the cingulate and frontal cortices of the dominant hemisphere are the most severely atrophic regions of the brain. Additionally, this atrophy is correlated with cognitive decline and emotional abnormalities. These findings are published in Neural Regeneration Research (Vol. 8, No. 21, 2013).

A group of proteins identified by researchers at Stockholm's KTH Royal Institute of Technology could play a role in helping multiple sclerosis patients get more accurate diagnostics about the severity and progress of their disease.

Like other autoimmune diseases, MS is complex and difficult to cure or to mitigate. At SciLifeLab in Stockholm, Peter Nilsson, professor in Proteomics at the School of Biotechnology, leads a group that that is looking for answers in large scale protein analysis.

By analysing tens of thousands of protein fragments for new autoimmunitybiomarkers, or indicators, the group is identifying proteins that distinguish groups of MS patients according to the severity of the disease and how the disease develops over time. Their progress was published in the June 3 issue of Molecular & Cellular Proteomics.

"A group of 51 proteins have been identified as useful in future research around the diagnosis of MS," Nilsson says. "This is to study the origin of the disease and its development - how severe it will be and how quickly it evolves over time."

As part of the Human Protein Atlas (HPA) project, Nilsson's group has access to more than 38,000 protein fragments. Nilsson says the HPA offers a unique resource that enables the team, which also includes Burcu Ayoglu, Anna Häggmark, Mohsen Khademi, Tomas Olsson, Mathias Uhlén and Jochen Schwenk, to continue their research with confidence.

"We expect a whole new field of research to open up around autoimmune disease, and with that, new insights," Nilsson says.

"Many autoimmune diseases are very complex and we currently lack complete knowledge of them," she says. "Most likely there are many more indicators to find. Our wide approach - in which we study thousands of proteins - is very suited to studying these autoimmune diseases."

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

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